Endocrinology GIRFT Programme National Specialty Report - Getting It Right First Time
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Endocrinology
GIRFT Programme National Specialty Report
Professor John Wass and Mark Lansdown
GIRFT clinical lead for endocrinology and GIRFT clinical ambassador February 2021
GIRFT is delivered in partnership with the Royal National Orthopaedic Hospital NHS Trust, NHS England and NHS Improvement
Contents
Introduction ................................................................................................................................................................4
Statements of support ...........................................................................................................................................5
Executive summary .................................................................................................................................................6
Recommendations...................................................................................................................................................9
What is endocrinology?......................................................................................................................................14
About our analysis.................................................................................................................................................20
Findings and recommendations.....................................................................................................................21
Optimising patient pathways ..................................................................................................................21
Ensuring endocrinologists and surgeons record and know their numbers,
outcomes and complication rates .........................................................................................................36
Concentrating key procedures among fewer surgeons to avoid low volumes...............39
Innovations in endocrinology..................................................................................................................48
Workforce.........................................................................................................................................................55
Implementing tier 3 obesity services...................................................................................................61
Improving data quality and data collection ......................................................................................66
Procurement............................................................................................................................................................71
Litigation ....................................................................................................................................................................74
Activity and notional financial opportunities ..........................................................................................77
About the GIRFT programme..........................................................................................................................79
Glossary......................................................................................................................................................................81
Acknowledgements..............................................................................................................................................83
Appendix 1: List of trusts visited during endocrinology deep dives.............................................84
Appendix 2: Volume–outcome relationships in total thyroidectomy.........................................86
Appendix 3: BADS-recommended lengths of stay ...............................................................................89
Appendix 4: Questionnaire for providers .................................................................................................90
Appendix 5: Management of postoperative hypocalcaemia flow chart ....................................97
2
Foreword from Professor Tim Briggs GIRFT Programme Chair
I am delighted to recommend this Getting It Right First Time review of endocrinology, led by Professor John Wass.
This report comes at a time when the NHS has undergone profound changes in response to the COVID-19 pandemic. The
unprecedented events of 2020 – and the extraordinary response from everyone working in the NHS – add greater
significance to GIRFT’s recommendations, giving many of them a new sense of urgency.
Actions in this report, such as running outpatient services more efficiently by making better use of pre-testing and remote
appointments, can help the NHS as it faces the substantial challenge of recovering services, while remaining ready for any
future surges, by operating more effectively and safely than ever before.
Professor Wass has applied the GIRFT approach to his field, a growing specialty that covers some of the most common
conditions as well as some of the rarest. Endocrinology sits at the intersections of different types and settings of care:
medical and surgical, primary and secondary and overlapping between other specialties.
This distinctive specialty presents some interesting challenges, such as ensuring that patients’ diagnoses, treatment and
care are provided at the appropriate level and by a clinician or surgeon who has the relevant expertise and experience, and
that endocrinology activity and outcomes are recorded and audited.
The recommendations set out in this report are based on Professor Wass’ visits to 126 trusts, in addition to other data,
audits and a detailed survey of trusts. Implementing these 17 recommendations will optimise pathways for our patients and
our use of clinical time, reduce low volume operating, implement much needed tier 3 obesity services across the country
and support continued innovation in the specialty.
One thing that was clear from all of Professor Wass’ visits was that staff were working very hard to provide excellent
endocrinology services to patients. I am most heartened to hear how supportive people have been as he has been carrying
out his review.
It is crucial to recognise this excellence and collaborative spirit. GIRFT cannot succeed without the backing of clinicians,
managers and all of us involved in delivering care.
My greatest hope is that GIRFT will provide further impetus for all those involved in endocrinology, in different disciplines,
settings and specialties, to work shoulder to shoulder to deliver solutions and improvements that will improve the experience
and outcomes for patients.
Professor Tim Briggs CBE
GIRFT Programme Chair and National Director of Clinical Improvement for the NHS.
Professor Tim Briggs is a consultant orthopaedic surgeon at the Royal National
Orthopaedic Hospital NHS Trust, where he is also Director of Strategy and External Affairs.
He led the first review of orthopaedic surgery that became the pilot for the GIRFT
programme, which he now chairs. Professor Briggs is also National Director of Clinical
Improvement for the NHS.
3
Introduction
Endocrinology is an exciting, important and growing specialty encompassing both common and extremely rare conditions, some
of which require complex management. In 2018/19 there were 626,686 recorded endocrinology adult outpatient attendances
and this number is growing year by year. Thus in the last five years endocrine outpatient activity has increased by 31% excluding
diabetes and obesity, over and above general medical outpatient activity, which increased by 17.5%. Often significant delays in
diagnosis occur but the opportunity is there to make huge differences to people’s quality and quantity of life, e.g. with timely
treatment for Addison’s disease and thyroid disease and we can help achieve pregnancy in infertile couples, a truly life changing
effect on a patient’s life.
Endocrinology continues to rapidly advance, producing huge amounts of research that are contributing to our increased
knowledge from this country and around the world.
The GIRFT programme has provided an invaluable opportunity to look across the breadth of our specialty and ask searching
questions about variations in current practice and to reflect on and share examples of innovation and best practice in the many
places where we found them. One thing that was clear in our visits throughout England was that all the staff in endocrinology
were working very hard, often in difficult circumstances, to provide excellent services to patients.
Our aim has been to see how best endocrinology can manage a broad range of conditions through multidisciplinary team working.
This means ensuring that patients are offered care at the most appropriate level and are dealt with by professionals, both
physicians and, where necessary, surgeons, with significant experience in treating their condition.
Surgery plays an important role in the treatment of a proportion of patients with endocrine disorders. For some conditions it is
the best available treatment and for others it will be a matter of patient choice. Patients, and the endocrinologists who refer
them for surgery, need to have confidence in the surgical team and know their outcomes and complication rates. Surgeons should
have the appropriate skills and knowledge to carry out their work, ensuring they do not act outside their competence.1 The
rational way for surgeons to demonstrate that they have achieved good outcomes for endocrine patients is through audit.
However, at some visits we found surgeons who did not submit their data for audit. This goes against the best practice set out
by the General Medical Council (GMC), which states that all surgeons must contribute to audit. The document Good Surgical
Practice2 explains how the GMC guidance should be interpreted. Surgeons are expected to submit all activity data to national
audits and databases relevant to their practice and present the results at appraisal for review against the national benchmarks.
Hospital Episode Statistics (HES) data was not originally developed for clinical audit but, never the less, analysis of this information
shows substantial variation in some outcomes and lengths of stay. Variation of outcomes is also seen in the national audit, the
United Kingdom Register of Endocrine and Thyroid Surgery (UKRETS). The opportunity provided by the GIRFT programme
for sharing best practice will, we believe, lead to an improvement in quality of care and outcomes for patients undergoing
endocrine surgery.
Recognition of endocrinology in hospital coding systems is far from perfect. Indeed, some hospitals (including one university
teaching hospital) have no documented endocrine cases, despite the fact that the clinicians are very busy with such cases. This
needs to be rectified urgently; it not only affects the visibility of the specialty as a whole, but has a detrimental effect on income
for these hospitals.
As the health needs of the population change, so does the provision required, and we have identified an urgent need for obesity
services at least at Tier 3 level in hospitals across the country. Currently this is the case in only 44% of the hospitals we visited.
This is a challenge for endocrinology and one we have addressed in our recommendations.
We now must make sure that the recommendations are achieved and we have carefully set out how and by when this should happen.
We thank all those stakeholders who have been involved in this process and offered their insights. We, and they, are optimistic
about the future of our specialty.
Professor John Wass Mark Lansdown
Clinical Lead, Professor of Endocrinology, Consultant Endocrine Surgeon,
Oxford University and Former Chair Former President BAETS and
of the Clinical Reference Group for GIRFT Clinical Ambassador
Endocrinology in the UK
1
General Medical Council (GMC) (2019), Good medical practice, paragraphs 14 and 66, www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/good-medical-practice
4 2
Royal College of Surgeons (2014), Good surgical practice, https://www.rcseng.ac.uk/standards-and-research/gsp/
Statements of support
Society for Endocrinology
The Society for Endocrinology welcomes and endorses this endocrinology report from the GIRFT programme. The report
has highlighted that patient pathways must be better optimised with streamlined referral and follow-up processes. It has
described that data quality and collection is a weakness which compromises safety and effectiveness. The report has
emphasised the crucial role of endocrine nurses and support staff in maintaining patient-centred service efficiencies.
These findings are consistent with evidence we have seen through our own Interdepartmental Peer Review scheme, and are
issues that have been discussed and addressed at our committees. This report will support better consistency of endocrine
care across NHS trusts, and the process itself has already prompted a drive to improve clinical practice in endocrinology.
The report is timely; the COVID-19 pandemic has severely disrupted endocrinology services and as we reintroduce services
we now have a great opportunity to reinvent the practice of our specialty. Our accelerated learning over the past few months
will enable us to support the endocrine community to effectively implement the recommendations from GIRFT to improve
endocrinology services for the benefit of our patients.
Professor Professor
Stephanie Baldeweg Rajesh Thakker
Clinical Committee Chair, FRS FMedSci
Society for Endocrinology President, Society for Endocrinology
Royal College of Surgeons of England
The surgery for endocrine diseases straddles a number of specialties including ENT, transplant surgery, neurosurgery,
urology and within the former specialty of general surgery dedicated endocrine and hepatobiliary surgeons. The volume of
endocrine surgery in each NHS trust is small and within each of these specialisms even smaller. When this is the case it is
difficult to have meaningful audits and reduce variation in techniques and management towards best practice and a reduction
in complications. The optimal outcomes for our patients will result from the concentration of medical and surgical
endocrinology into specialist multidisciplinary teams. All patients having endocrine surgery should be registered in the
national UKRETS database, allowing the proper analysis of large patient cohorts.
I welcome the GIRFT programme specialty report on endocrinology and particularly support the recommendations for
improving surgery in this fascinating and often challenging group of patients.
Professor Neil Mortensen
President, Royal College of Surgeons of England
5
Executive summary
Our GIRFT review of endocrinology has found a significant degree of unwarranted variation in a number of key areas. After
further investigation and analysis there appear to be several important opportunities to improve patient care and outcomes
in endocrinology along with a notional financial opportunity of between £5.5m and £9m a year.
Getting it Right First Time (GIRFT)
The GIRFT programme is funded by the Department of Health and Social Care and jointly overseen by NHS Improvement
and the Royal National Orthopaedic Hospital NHS Trust.
GIRFT seeks to identify variation within NHS care and then learn from that variation. It is one of several workstreams
designed to improve operational efficiency in NHS hospitals. In particular, it is part of the response to Lord Carter’s review
of productivity, and is providing vital input to the Model Hospital project.
GIRFT is closely aligned with other programmes seeking to improve standards while delivering efficiencies, such as NHS
RightCare, acute care collaborations (ACCs) and sustainability and transformation partnerships (STPs)/integrated care systems.
Under the GIRFT programme, data from many NHS sources is consolidated and analysed to provide a detailed national
picture of the specialty being reviewed. This process highlights variations in care decisions, patient outcomes, costs and
other factors. The data is then reviewed by a GIRFT clinical lead for the specialty – an experienced clinician who is recognised
as an expert in their specialty.
The clinical leads visit each individual hospital trust to discuss the data with senior management and clinical teams. These
deep-dive visits provide an opportunity for both parties to learn. The individual trusts are able to understand where their
performance appears to be below average and can draw on clinical expertise to identify actions targeted at addressing
performance issues. At the same time, the clinical lead builds a national picture of best practice that feeds into service-wide
improvement recommendations and an implementation programme to drive change and address unwarranted variation.
Endocrinology today
Endocrinology is a relatively small but rapidly growing specialty covering a range of conditions that affect or originate in the
body’s endocrine system. Some of these are relatively easily managed while others require medical treatment and/or surgery,
which may be complex and/or urgent in some cases. The overlap between endocrinology and other specialties means surgical
procedures may be carried out by surgeons from a range of clinical backgrounds.
The specialty is characterised by a significant amount of outpatient work, including long-term follow-up for several
conditions.
About our analysis
We identified 126 trusts providing endocrinology services, each of which we supplied with a data pack and visited for a
‘deep dive’. We also made copious use of additional data, both from a questionnaire sent to each of the 126 trusts and from
various additional sources, as cited throughout this report. While paediatric services were not specifically examined in our
deep dives or the data, we feel the recommendations in this report can still be considered and applied within paediatric
endocrinology, ensuring it is well-evidenced.
What we found
Where we found unwarranted variation we investigated this and applied data analysis to examine the situation in detail
wherever possible. We grouped our findings and subsequent recommendations under the headings that follow.
Optimising patient pathways
Streamlined pathways are at the heart of good patient care and yet there is a wide range of anomalies at present, which may
undermine this. Poor delineation between the roles of primary and secondary care means diagnostic tests are being
duplicated unnecessarily, causing delays and uncertainty. Unclear definitions around what constitutes specialised care can
also cause delays and exacerbates funding issues. Hub and spoke and networked care provision should be the dominant
service model for specialist care, but this is not currently the case in all trusts. Patients with life-threatening non-cancer
endocrine conditions are being delayed while non-life threatening cancer conditions are prioritised. Lengths of stay for the
6
same procedure vary to a degree that goes beyond what we feel is acceptable. This is detrimental to patients, who would
rather be at home, and prevents trusts from freeing up beds.
Ensuring endocrinologists and surgeons record and know their numbers, outcomes and complication rates
Effective audit and the availability of data thus attained is key to ensuring safe and effective care; an unaudited service can
provide no assurance that it is either safe or effective. This is particularly pertinent when it comes to recording the
complications arising from surgery, which can be life changing for patients with serious endocrine conditions. There is
currently an unacceptably low rate (53%) of surgeons entering data on the ‘mandatory’ UKRETS audit. There is also a lack
of clarity around known complications of endocrine surgery and the protocols associated with them.
Concentrating key procedures among fewer surgeons to avoid low volumes
There is a growing body of knowledge to support the theory that low-volume surgery is more likely to result in outcomes
that are less successful and less safe. For the more common procedures, patients should be treated by surgeons who perform
these operations regularly. Where surgery is for rare or complex conditions, the case is even more compelling. Our
investigations revealed unwarranted variation in the individual surgeon volumes considered acceptable for endocrine
procedures. Based on the information available, it seems irrefutable that, in order to ensure the best outcomes for patients,
trusts should work collaboratively and/or in networks to ensure that patients requiring complex or rarely performed surgical
procedures are directed only to surgeons with appropriate training and experience.
Innovations in endocrinology
Effective management of referrals, waiting lists and, in particular, follow-up appointments is vital to ensuring endocrinology
continues to grow without placing undue strain on patients, the endocrine workforce or trusts as a whole. We noted in
particular scope to improve triage and pre-investigation for outpatient referrals and the management of follow-up
appointments.
Workforce
It is vitally important, particularly for a growing specialty, that the workforce is structured around the needs of patients.
Where this is not the case, for whatever reason, quality of care suffers. Endocrinology relies on highly trained
multidisciplinary teams (MDTs) and it is important that clinicians’ time is freed up to care for patients. We noted in particular
a high degree of variation in the number of trained endocrine specialist nurses available within trusts, who provide not only
clinical expertise but leadership, as well as other staff who can offer crucial support to clinicians and registered nurses
running clinics, thus increasing efficiency and quality of care.
Implementing Tier 3 obesity services
Obesity is, as is well established, an increasingly important marker of healthcare needs and comes with a significant number
of complications. It is also a growing problem across the nation. Currently only 44% of trusts provide obesity services at
Tier 3 level (specialist non-surgical and multidisciplinary) or above to care for these patients, many of whom have significant
co-morbidities. In agreement with the clinical leads for the GIRFT diabetes report, we recognise this as a situation requiring
urgent action.
Improving data quality and data collection
We noted during our analysis that inconsistent or absent coding for endocrinology activity is not unusual, with the result
that the specialty is underrepresented in the data of many trusts. This is due in part to historical anomalies and in part simply
to poor communication between clinicians and coders. It is also the case that there is, in many trusts, only a vague delineation
between coding for outpatient and day case endocrine activity.
Litigation
There is some evidence that litigation claims could not be defended effectively because providers lacked the necessary
documentation. It was also interesting that many providers had little knowledge of the claims against them. We recommend
that providers employ GIRFT’s five-point plan to help reduce litigation costs.
7
Making it happen – GIRFT regional support
Our report makes 17 recommendations and identifies owners and timelines for each one.
GIRFT regional teams support providers in implementing the recommendations.
They provide practical advice based on the research data, feedback from visits and expert input of experienced clinicians.
8
Recommendations and actions
Recommendation Actions Owners Timescale
1. Reduce unnecessary a GIRFT and the Society for Endocrinology to provide GIRFT, Society for 12 months
duplication of diagnostic guidance on which diagnostic tests are appropriate to Endocrinology
tests to streamline initial be carried out or commissioned by GPs prior to referral
referral and avoid to secondary or specialist care, and which should follow
wastage. Appropriate or be conducted at an initial outpatient visit or
information sharing is an arranged between referrer and referee.
essential part of the
b GIRFT to ensure guidelines on diagnostic testing at GIRFT 12 months
provision of safe and
appropriate point in patient journey inform Choose and
effective care.
Book criteria.
c In line with new NHS Digital’s Data and Technology Trusts 2 years
Standards Framework, providers should look to
improve digital interoperability to enable clearer
visibility in both directions on the electronic patient
record around which tests have been conducted/
requested, as well as any which follow after diagnosis
and treatment.
2. Expedite prompt referral a GIRFT to ensure proposed list of endocrine conditions GIRFT 6 months
to specialised care where which indicate a need for specialised care are fed into
indicated (in this NHS England review of specifications for specialised
recommendation we endocrinology services.
support the work of the
b Trusts to declare compliance with service Trusts For immediate
NHS Neuroscience
specifications for treating these conditions through the action
Transformation
Quality Surveillance Information System (QSIS).
Programme and the work
currently being c Trusts to agree referral and repatriation criteria and Trusts 12 months
undertaken by NHS record these consistently to ensure that referrals
England to rewrite the between centres include a clear rationale for the need
specification for for specialist input in a standardised way.
specialised adult
endocrinology services).
3. Deliver networked a Trusts to establish service-level agreements to Trusts For substantial
service models so that facilitate and deliver recommended network service progress within 1
patients can be referred arrangements and models (see recommendation 8) year
to the most appropriate including for:
surgeon and the correct i. treatment of medullary thyroid cancer;
level of care.
ii. adrenalectomies (and to ensure within each
network there is a hub for adrenal cancer and
phaeochromocytomas);
iii. pituitary surgery.
4. Consider options to a GIRFT to work closely with NHS England and trusts to GIRFT, NHS 12 months
accelerate urgent review referral pathways for life-threatening endocrine England
treatment for patients conditions or conditions which have risks of major
with serious non-cancer complications (listed below) to ensure that patients can
endocrine conditions. access urgent treatment without unnecessary delay
once diagnosis is confirmed:
i. phaeochromocytoma;
ii. severe hypercalcaemia;
iii. severe pressure symptoms of enlarged thyroid;
iv. Cushing’s syndrome;
v. severe Graves’ disease.
9
Recommendation Actions Owners Timescale
5. Ensure that where a Trusts to review their patient pathways with a view to Trusts For immediate
clinically appropriate, achieving the following targets for elective admissions:3 consideration and
lengths of stay for surgical i. 90% of patients having parathyroid surgery for action within 6
procedures are reduced. primary hyperparathyroidism to be discharged with months
zero night stay (day case);
ii. 90% of patients undergoing thyroid lobectomy to
be discharged with no more than one night’s stay;
iii. 90% of patients undergoing total thyroidectomy to
be discharged with no more than two nights’ stay.
6. Improve audit and a All surgeons carrying out thyroid surgery, as well as Trusts, BAETS For immediate
availability of data relating those carrying out parathyroid or adrenal surgery action
to all endocrine should participate in the British Association of
operations. Endocrine and Thyroid Surgeons (BAETS) electronic
UK Registry of Endocrine and Thyroid Surgery
(UKRETS) to allow for accurate auditing of services.
b Trusts to include data capture for national audit as part Trusts Immediate and
of job descriptions and job planning for consultants, ongoing
with time allocated as required.
7. Agree clearer definitions a GIRFT to work with patient groups and professional GIRFT 6 months
and protocols for surgical societies to review and agree clearer definitions of
complications. surgical complications e.g. deficient calcium post
thyroidectomy, damage to the recurrent laryngeal
nerve post-thyroidectomy and hypopituitarism post
hypophysectomy (removal of the pituitary gland).
b GIRFT to work with professional societies to share GIRFT 12 months
exemplar protocols for conditions where surgery
involves a known risk of life-changing complications or
post-operative issues, e.g. thyroid bleed protocols.
8. Trusts should work a Optimise specialist endocrinology care and ensure a Trusts, STPs 1 year to develop
collaboratively in safe service is provided, as recommended in national networks
networks or amalgamate service specifications and international guidelines.
services to concentrate In particular:
surgical expertise. Direct i. Centres carrying out very few adrenalectomies Immediate
patients requiring surgery (under six adrenalectomies per surgeon per year or
to appropriately trained under 20 if they are operating on patients with
surgeons performing the adrenal cancer and phaeochromocytoma) should
recommended volume of stop doing so. These centres should refer patients
procedures. to surgeons within their network who perform this
procedure at higher volumes.
ii. Centres carrying out thyroid surgery should ensure Immediate
surgeons are carrying out a minimum number of 20
thyroid operations each per annum or that patients
are being referred to surgeons within their network
who perform these procedures at higher volumes.
iii. Centres carrying out parathyroid surgery should Immediate
ensure surgeons are operating on at least 20
patients per annum or that their patients are being
referred to surgeons within their network who
perform these procedures at higher volumes.
10 3
See Appendix 3 for a table summarising BADS-recommended lengths of stay for the procedures listed.Recommendation Actions Owners Timescale
8. (continued) a iv. Centres carrying out pituitary surgery should Trusts, STPs Immediate
Trusts should work ensure surgeons are operating on 20 patients per
collaboratively in annum, aspiring to 50 operations per department
networks or amalgamate per year or their patients should be referred to
services to concentrate surgeons within their network who perform these
surgical expertise. Direct procedures at higher volumes.
patients requiring surgery
b Endocrinology departments should work with regional Trusts 6 months
to appropriately trained
vascular and radiology networks to optimise numbers
surgeons performing the
regionally and improve success rates of adrenal venous
recommended volume of
sampling (AVS) and petrosal sinus sampling.
procedures.
c GIRFT to work with the NHS pricing team to ensure GIRFT, 12 months
that commissioning models encourage best practice by NHS pricing team
only funding adrenalectomies and pituitary surgery
where these are carried out at a specialist centre.
9. Review appropriate triage a Trusts to review current protocols around pre- Trusts 6 months
and pre-investigation for investigation diagnostic blood/urine tests prior to first
outpatient referrals to outpatient appointment, to enable between 30-50% of
improve patient flow, patients to be pre-investigated and triaged.
address capacity
b Trusts, with input from the Society for Endocrinology, Trusts, Society for 12 months
challenges and enable
to develop protocols for the implementation of Endocrinology
innovative practice.
clinical/referral assessment services to support
appropriate triage of outpatient referrals and increase
the likelihood of discharge at first appointment.
10. Review management of a Society for Endocrinology to develop follow-up Society for 12 months
follow-up appointments. protocols to ensure that endocrinology departments Endocrinology
can benchmark performance against approved
pathways for each endocrine condition.
b GIRFT to work with the National Outpatient GIRFT, NOTP 6 months
Transformation Programme to look at increasing
availability of remote appointments/virtual clinics,
especially for follow-ups.
c Trusts to explore options to advance to a core level Trusts 12 months
of digitisation by 2024, as set out in the NHS Long
Term Plan.
d GIRFT to work with the NHS pricing team and the GIRFT, 6 months
National Outpatient Transformation Programme to NHS pricing team,
review current pricing arrangements and incentives NOTP
for video versus telephone appointments.
11. Ensure all surgeons and a GIRFT and Joint Committee on Surgical Training GIRFT, JCST, SAC 12 months
wider team members (working with the specialty and subspecialty Specialist
involved in endocrine Advisory Committees) to jointly produce a cross-
activity have access to specialty endocrine surgery module for pre- or post-
the latest information certificate training.
and training to maintain
b Trusts should endeavour to facilitate and support Trusts 12 months
their competence.
endocrinology-specific training for the wider
endocrinology team, including Society for
Endocrinology training for nurses.
11Recommendation Actions Owners Timescale
12. Ensure the a To enable better workforce planning and support Trusts For immediate
endocrinology service delivery, trusts should review the resourcing of discussion
department is fully their endocrinology MDTs and relevant surgical
optimised to release services considering in particular:
clinicians’ time to care in i. Employing at least one but ideally two specialist
line with associated nurses (dependent on department workload/
NHS People Plan demand) to carry out pre-investigation
programmes. assessments for outpatients, lead clinics and
support pre/post-operative care. The specialist
nurse support for the surgical service may be the
same or separate from that for the endocrinology
service. Trusts would need to make a business case
to ascertain the value of this action.
ii. Increasing administrative and clerical resource to
provide support for clinics.
b GIRFT to work with NHS England and Improvement GIRFT, 12 months
People Directorate to action specialist nursing NHS England,
workforce needs in endocrinology and encourage NHS Improvement
uptake of Society for Endocrinology training courses People Directorate
for specialist nurses.
13. Improve access to a Endocrinology units should appoint a dedicated obesity Trusts 6 months
weight assessment and lead in their team (where they have not already).
management services
b Trusts should work with integrated care systems to Trusts, ICSs 1 – 2 years
for patients with
implement Tier 3 obesity services, with a specialist
complex obesity.
multidisciplinary team in place to assess and manage
patients (where they have not already).
These actions are also endorsed by the GIRFT clinical
leads for diabetes.
14. Accurately assign main a Trusts to ensure all endocrinology activity is coded Trusts 12 months
specialty and treatment using treatment function code 302, and either main
function codes to ensure specialty code 300 (general medicine) or 302
endocrinology activity is (endocrinology), according to the job plan of the
appropriately captured. consultant who undertook the activity.
15. Ensure there is clear and a Society for Endocrinology, in collaboration with GIRFT, Society for 6 months
consistent delineation to produce clear guidelines around which Endocrinology,
between outpatient and endocrinology procedures should be conducted as day GIRFT
day case endocrine cases (using proposed list - see page 70).
activity and that pricing
b GIRFT endocrinology team to feed into the GIRFT GIRFT 12 months
arrangements reflect
coding workstream with insight on procedures which
this.
require more time/resource than a standard outpatient
appointment, but less than day case activity.
c GIRFT to work with NHS England and NHS GIRFT, NHS 12 months
Improvement to review pricing arrangements for England, NHS
outpatient and day case procedures to standardise Improvement
funding and incentivise best practice.
12Recommendation Actions Owners Timescale
16. Enable improved a Use sources of procurement data, such as the NHS GIRFT For continual
procurement of devices Spend Comparison Service and relevant clinical data, action throughout
and consumables to identify optimum value for money procurement the GIRFT
through cost and pricing choices, considering both outcomes and cost/price. programme.
transparency,
b Identify opportunities for improved value for money, GIRFT For continual
aggregation and
including the development of benchmarks and action throughout
consolidation, and by
specifications. Locate sources of best practice and the GIRFT
sharing best practice.
procurement excellence, identifying factors that lead programme.
to the most favourable procurement outcomes.
c Use Category Towers (CTs) to benchmark and GIRFT Upon completion
evaluate products and seek to rationalise and of 1B.
aggregate demand with other trusts to secure lower
prices and supply chain costs.
17. Reduce litigation costs a Clinicians and trust management to assess their Trusts For immediate
by application of the benchmarked position compared to the national action
GIRFT Programme’s average when reviewing the estimated litigation cost
five-point plan. per unit of activity.
b Clinicians and trust management to regularly discuss Trusts Upon completion
with the legal department or claims handler the claims of 17A
submitted to NHS Resolution included in the data set
to confirm correct coding to that department. Inform
NHS resolution of any claims that are not coded
correctly to the appropriate specialty via
CNST.Helpline@resolution.nhs.uk
c Once claims have been verified, clinicians and trust Trusts Upon completion
management to further review claims in detail, of 17B
including expert witness statements, panel firm reports
and counsel advice as well as medical records to
determine where patient care or documentation could
be improved. If the legal department or claims manager
needs additional assistance with this, each trust’s panel
firm should be able to provide support.
d Claims should be triangulated with learning themes Trusts Upon completion
from complaints, inquests and serious incidents of 17C
(SIs)/Patient Safety Incidents (PSIs) and, where a claim
has not already been reviewed as SI/PSI, we
recommend that this is carried out to ensure no
opportunity for learning is missed. The findings from
this learning should be shared with all front-line clerical
staff in a structured format at departmental/
directorate meetings (including multidisciplinary team
meetings where appropriate).
e Where trusts are outside the top quartile of trusts for Trusts For continual
litigation costs per activity, GIRFT will be asking national action throughout
clinical leads and regional teams to follow up and GIRFT programme
support trusts in the steps taken to learn from claims.
Clinical leads and regional team directors will also be
able to share examples of good practice with trusts.
13What is endocrinology?
Endocrinology is a branch of medicine that relates to the human endocrine system. The human endocrine system comprises
several glands in the body which secrete hormones directly into the blood. These hormones control many complex human
functions such as sexual development, reproduction, metabolism, growth and weight gain, to name but a few.
Endocrinology is concerned with the functioning of the glands outlined below.
The pituitary gland, which sits in the
bony hollow at the base of the skull,
beneath the brain and behind the nose,
Hypothalamus
and is attached to the hypothalamus,
Pineal gland controls the function of other glands in
the body, including the thyroid and
adrenals, ovaries and testes
The thyroid gland is
located in the neck and
controls metabolism
Thymus The four parathyroid glands
are located behind the
thyroid and help regulate
the amount of calcium in
the body
The pancreas is attached to
the duodenum and contains
islet cells which secrete insulin
and other hormones that
regulate blood glucose levels
The adrenal glands sit on
Ovary top of each kidney and
(in female) produce steroid hormones
and adrenaline
Placenta
(during pregnancy)
Testicle
(in male)
14Disorders of the human endocrine system are hugely varied and wide-ranging and, left untreated, can be life-threatening.
They include conditions that require urgent treatment and may necessitate emergency admission, such as
phaeochromocytoma, pituitary apoplexy and hypoglycaemia caused by insulinoma, as well as others that are true electives,
such as hyperparathyroidism, where treatment can be planned in advance. There are also many endocrine conditions that
are relatively easily managed on an outpatient basis.
Endocrinology is a small but very important specialty, which is continuing to evolve rapidly. It is fair to say that endocrine
activity is not fully recognised by many trusts. GIRFT deep-dive visits have shown there are a number of trusts that record
no endocrinology activity at all. This reflects an ongoing problem with specialty attribution and data collection – a challenge
that will be covered in this report. The specialty is growing in importance (the number of outpatient appointments has
increased by 31% in the last five years) and it is hoped that the GIRFT process will increase the recognition of endocrinology
throughout England and the NHS.
A number of surgical specialties are involved in providing endocrine surgery. In many trusts these surgical services are not
well organised and operate on small numbers of patients with uncertain outcomes. We have made recommendations to
address this.
As endocrine disorders can include thyroid disease, diabetes and obesity, there is significant cross-talk between specialists.
There is also some overlap, which we have noted where it occurs, between endocrinology and other GIRFT reports, including
ear, nose and throat (ENT) and diabetes.
Table 1: Examples of a range of endocrine disorders and their treatment
Organ Condition Recommended treatment/urgency
Thyroid and parathyroid Hypothyroidism Medication (thyroxine)/urgency varies
according to severity
Thyrotoxicosis Medication, radioactive iodine or surgery/
urgency varies according to severity
Hyperparathyroidism Parathyroidectomy/urgency varies
according to severity
Adrenal Cushing’s disease Surgery/urgency varies according to
severity
Addison’s disease Steroids/urgent
Pituitary Tumours producing prolactin Surgery in all cases (except prolactinoma)/
(prolactinoma) the urgency of surgery should be
determined early by the pituitary MDT
Non-functioning
Growth hormone overproduction
(acromegaly)
Adenoma producing ACTH
(overproduction of cortisol, Cushing’s
disease)
Pancreas Diabetes Diet and/or insulin/urgency varies
according to severity
Neuroendocrine tumours Surgery/urgent
15The relationship between endocrinology and endocrine surgery
For patients with endocrine disorders such as thyroid cancer, surgery is sometimes the best or only available treatment that
offers a cure. For other conditions, such as thyrotoxicosis (where too much thyroid hormone is circulating in the body), the
patient can choose surgery, treatment with radioactive iodine or continued medical management.
Endocrine surgical procedures are carried out on the thyroid and parathyroid, the adrenal and pituitary glands and the
pancreas, or to remove tumours elsewhere (paraganglioma for example, which are tumours that in some cases produce
adrenaline and can occur in the head, neck, chest or abdomen) that cause hormonal dysfunction.
The overlap between endocrinology and other specialisms means that surgeons with a range of clinical backgrounds may
perform endocrine procedures, but it should be noted that the general surgery curriculum allows specialist training and
examination in endocrine surgery as a distinct sub-specialty. Trainees who have taken this part of the Fellowship of the Royal
College of Surgeons (FRCS) exam are often called endocrine surgeons. For an overview of endocrine surgery see Table 2 below.
Surgery for morbid obesity is not covered in this report.
Table 2: Overview of endocrine surgery
Gland Type of surgery Surgeons who perform Surgical practice and training
this procedure
Thyroid and Part or complete Endocrine surgeons Surgery of the thyroid and parathyroid is covered in
parathyroid removal of thyroid/ the curriculum of surgeons training in ENT and
ENT surgeons
parathyroid, excision general surgery.
of thyroid or General surgeons Some general surgeons offer thyroid and or
parathyroid tumours parathyroid surgery in addition to another surgical
sub-specialty while others devote the whole of their
time to endocrine surgery (endocrine surgeons).
Some ENT surgeons devote all or most of their time to
treating patients with thyroid conditions, while others
include thyroid surgery alongside a more general ENT
practice or surgery for head and neck cancers.
Adrenal Partial or complete Endocrine surgeons Most endocrine surgeons operate on the adrenal gland.
removal of the Adrenal surgery is in the general surgery curriculum for
Urologists
adrenal gland, the sub-specialty endocrine surgery but not in the
excision of adrenal General surgeons curriculum of surgeons training to be urologists. It has
tumours. become custom and practice that some urologists offer
adrenal surgery in some hospitals.
Pituitary Excision of pituitary Neurosurgeons Removal of intracranial tumours from within the brain is
tumours covered under the specialist neurosurgery curriculum.
ENT surgeons
(jointly working with
neurosurgeons)
Pancreas Excision of the rare Endocrine surgeons Some but not all endocrine surgeons operate on rare
gastrointestinal and gastrointestinal and pancreatic endocrine tumours.
Other sub-specialties
pancreatic endocrine Pancreatic endocrine surgery is usually performed in
of general surgery,
tumours. centres offering surgery for the more common form of
particularly
Partial or occasionally hepatobiliary and (exocrine) pancreatic cancer.
complete removal of pancreatic surgeons.
the pancreas.
16ENT and general/endocrine surgeons are represented by the British Association of Endocrine and Thyroid Surgeons
(BAETS), which supports appropriate standards for endocrine surgery and maintains the United Kingdom Register of
Endocrine and Thyroid Surgery (UKRETS). ENT UK, the representative body for ENT surgeons also recommends that
thyroid surgery is audited through UKRETS.
It is vital that surgeons work very closely with endocrinologists and anaesthetists in multidisciplinary teams (MDTs) to
optimise outcomes for patients who need or choose to have surgery for endocrine disorders. There are currently national
recommendations for multidisciplinary team working for thyroid cancer4 and for adrenal5 and pituitary surgery,6 and there
is no doubt that in successful units there is strong collaboration between these specialties for all endocrine patients whose
management involves surgery.
Current challenges facing endocrinology
In 2018/19 the specialism recorded 626,686 adult outpatient attendances. This number has been growing steadily over the
last five years (31% increase as opposed to the 17.5% increase seen in outpatient attendances in general across the NHS).7
In England there are currently 125 endocrinology departments.8 We defined these as centres that see more than 100 patients
(new referrals and follow-up appointments) per year, 44 of which are specialist centres.
While we did not explore paediatric endocrinology, defined as services for those under 18 years of age, we believe the variation
found in adult services is also occurring in care for younger people. We do not present evidence to support this, but hope
that the recommendations of the report will be applied to both adult and paediatric endocrinology services.
The GIRFT process has identified wide variations in data about endocrinology that does not reflect what we know to be true.
This is partly due to a historical anomaly regarding ‘main specialty’ and ‘treatment function’ code assignment, with the result
that endocrinology, as a specialty, is not as visible as it should be in England. Coding is covered in detail in a separate section.
(see page 66)
A related issue is that the data does not currently allow a clear distinction between specialist and non-specialist endocrinology.
This not only affects optimal commissioning of specialised/non-specialised services but also, potentially, hinders prompt and
timely referral of patients to specialist care.
We outline a typical patient pathway below, followed by a description of the main challenges facing the specialty at each stage.
(For a more detailed discussion see Optimising patient pathways - page 21).
4
National Institute for Clinical Excellence (NICE) (2004), Improving outcomes in head and neck cancers. https://www.nice.org.uk/guidance/csg6
5
Palazzo, F., Dickinson, A., Phillips B. et al., (2016), Adrenal surgery practice guidance for the UK, 2016. www.baets.org.uk/wp-content/uploads/Adrenal-Surgery-Practice-
Guidance-for-the-UK-2016.pdf
6
National Institute for Health and Care Excellence (NICE) (2006), Improving outcomes for people with brain and other CNS tumours.
https://www.nice.org.uk/guidance/csg10
7
HES data on outpatient attendances 2013/14–2018/19.
17
8
We visited 126 trusts, two of which have since merged. See Appendix 1 for details.Typical patient pathway
Referral
The patient visits their GP with health concerns. Based on their symptoms, the GP may
first conduct or commission tests or may refer them directly to an endocrine service for
investigation, diagnosis and treatment, if appropriate. Timely referral in accordance with
best practice improves the likelihood of a good outcome.
Referral – challenges
Referral from primary care may be delayed or hampered by slow or inappropriate
testing or by referral to the wrong level of care (i.e. not referring a patient directly to
specialist care where this is indicated).
Access
After the patient has been referred to the endocrinology team they will be assessed via
case history and diagnostic tests, usually conducted on an outpatient or day case basis.
Pre-clinic testing protocols for different endocrine conditions will improve the efficient
running of a clinic by decreasing the number of repeat outpatient clinic visits that are
needed. Results should be discussed by an MDT where appropriate. Depending on the
outcome, the patient may be discharged if no treatment is required, referred on to a
specialist service, referred for surgery, offered a course of treatment or given help and
advice to manage their condition themselves. GPs may refer thyroid lumps and goitres
directly to a surgical team. Some referrals to endocrinologists are redirected to a
surgical team in some centres, where appropriate. Patients with possible thyroid cancer
are best referred on the two-week wait cancer pathway to ensure prompt investigation.
This should not be delayed by requesting scans before referral.
Access – challenges
Access to endocrine services at the appropriate level, including endocrine surgery, may
be delayed because of inefficiencies in booking/conducting tests after initial referral (i.e.
duplication of certain tests or multiple tests scheduled on different dates) as well as long
waiting lists and/or poor list management/communication. Patients requiring surgery
urgently who do not have a suspected cancer may find their surgeries postponed in
favour of patients with malignant tumours. Access may also be made more difficult
because of remote locations or a lack of co-ordination across sites.
For patients requiring weight management services, access can be particularly
problematic because there is a lack of provision across the country, with only 44% of
trusts offering obesity services at Tier 3 level or above.
Patients with possible thyroid cancer can have surgery delayed by being seen first in an
endocrinology clinic rather than a surgical thyroid clinic if the endocrinology team are
not familiar with the correct pathway.
Not all endocrinologists refer all patients who may benefit from parathyroidectomy for a
surgical consultation. NICE guideline 132 covers recommendations for referrals for
surgery for parathyroidectomy.
18Typical patient pathway (continued)
Surgery
Where surgery is indicated,9 the endocrinologist will refer the patient to a suitable and experienced
surgeon or MDT. When considering a surgeon we recommend consulting UKRETS and/or BAETS to
check that the surgeon undertakes suitable numbers of the procedure in question and has
acceptable outcomes.
This should be a shared decision based on information the referring clinician has discussed with the
patient. It is important not to make assumptions about the information patients might want, the
clinical or other factors a patient might consider significant or a patient's level of
knowledge/understanding of what is proposed.10 Patients with goitre and thyroid lumps may be
referred directly to a surgeon, especially when investigations for cancer are required. These
investigations are best done through a thyroid lump ‘one-stop’ clinic with access to ultrasound
imaging and fine-needle or core biopsy.
Surgery and post-operative care will ideally be managed within an MDT that employs at least one
specialist nurse with endocrinology training. Patients with cancer should have access to a suitably
trained cancer nurse specialist.
Patients with complications related to endocrine conditions may require separate referrals. For
example, patients with significant thyroid eye disease should be referred to an ophthalmic surgeon
who also usually works in an MDT for ophthalmic Graves’ disease.
Surgery – challenges
Access to a surgical team (where required) with the correct level of expertise and support may be
compromised by a lack of robust audit data on outcomes (affecting both commissioning patterns and
the patient and referring endocrinologist’s ability to make an informed choice) and, related to this, by
the existence of surgeons/trusts that perform procedures at low volumes. This can have an impact on
outcomes, length of stay and complication rates, because teams may lack experience and therefore
expertise in particular conditions/procedures.
Surgeons who do not participate in audit will be unable to convey the risks of surgery in their hands to
endocrinologists and patients. For referrals to surgeons directly from GPs there must be a robust
pathway to ensure patients are seen by a surgeon with appropriate expertise.
Support and follow-up
For patients who have had endocrine surgery and those facing life-changing conditions or ongoing
treatment, support and follow-up are important. This includes patients who need to be monitored
for post-surgical complications over time, who have a condition that requires ongoing monitoring
and/or self-care and where treatment and management involve long-term observation and/or
repeated procedures. Access to clinical nurse specialists for patients with thyroid and other
endocrine cancers is beneficial but not widely available. It is important that patients understand
what to expect in the way of follow-up care and that this is made clear at the point of discharge.
It is also helpful to signpost patient organisations, if this has not already been done.
Support and follow-up – challenges
Support and follow-up may be compromised where there are no endocrine specialist nurses within
the team and where clinics are not located in convenient locations or available remotely through
electronic means. Poor administration can also affect a service’s ability to provide support for
patients. If patient support and follow-up is not well managed, or is devolved back to primary care
without adequate planning, there may be gaps in provision.
9
National Institute for Health and Care Excellence (2019), Hyperparathyroidism (primary): diagnosis, assessment and initial management (NG132),
https://www.nice.org.uk/guidance/ng132
10
General Medical Council (GMC) (2008), Consent: Patients and doctors making decisions together, www.gmc-uk.org/-/media/documents/gmc-guidance-for-doctors--- 19
consent---english_pdf-48903482.pdf?la=en&hash=588792FBA39749E57D881FD2E33A851918F4CE7About our analysis
We carried out our analysis following the established GIRFT model (see page 79).
Identifying endocrinology service providers
First we set about assembling all of the relevant existing NHS data on endocrinology. However, identifying the hospitals
that provide endocrinology services proved surprisingly difficult due to issues of incorrect specialty coding. We cover this
in detail under Improving data quality and data collection (see page 66). Eventually we were able to identify 126 trusts with
some activity in endocrinology.11
Collecting additional data
We conducted our own supplementary data collection through an extensive questionnaire to providers (Appendix 4 - page
90). Where the data allowed, we benchmarked providers on key measures and identified where there was variation. We
received responses from 109 trusts.
Carrying out deep-dive visits
Deep-dive visits with providers are a vital part of the GIRFT process. At these meetings, we reviewed data at trust level,
engaging with clinical and managerial staff to review performance, provide advice and gather views and opinions.
We provided every trust with a data pack. We then visited 126 trusts to discuss the data in depth. During these deep-dive
visits, we looked closely at the national variation in clinical data. We discussed this detail at length with physicians and
surgeons, senior provider management and all those involved in delivering endocrinology services.
We also discussed our findings with the Society for Endocrinology and BAETS.
Overlap with other specialties
Thyroid surgery was covered in part in the GIRFT ENT report. The endocrinology report builds on this and adds depth as
well as capturing thyroid surgery performed by endocrine and other surgeons with a general surgical training.
In recent years the number of thyroid operations has steadily increased. This has been driven, at least in part, by the detection
on neck ultrasound of asymptomatic nodules of indeterminate nature. These are referred for investigation, and for many
patients a definitive diagnosis can only be established after surgery. During this time the number of operations performed
by endocrine/general surgeons has remained fairly static, though distributed amongst fewer surgeons as specialisation in
endocrine surgery developed. Thyroid surgery is increasingly performed by ENT surgeons, who now perform more than
half the total number of operations per year. Overall, the mean number of thyroid procedures per individual surgeon has
fallen recently from 12.5 to 11.6 between 2013/14 and 2017/18.12 The mean number of cases per trust also fell from 26.3
to 24.5. This suggests that national guidelines (recommending a minimum of 20 cases per surgeon) are not being followed
consistently.
There is also a significant overlap with diabetes (obesity) and, to a lesser extent, with rheumatology e.g., osteoporosis.
11
Two of these trusts have since merged. A full list of trusts visited can be found in Appendix 1
20 12
Gray, W. K. (Senior Research Associate GIRFT Programme), Analysis of HES data.You can also read
